A Dedication

This will be, unlike most of my others, a short blog posting. The fact that it is short should not detract from the message and the emotion it conveys. I write this as a dedication to a woman whom I only came to know about nine days ago. She is a woman that you already know. Her name is Colusha Nyogusenga, and she is 34 years old. You met her in my recent blog post about the mupfumu and medical care in Burundi. She is the one who, against her wishes, was taken to the mupfumu for treatment of her massively enlarged abdomen. He performed multiple scarifications and prescribed a soup of herbs. It was when those mupfumu methods did not work that she came to the clinic. She came, like so many others, to be cured. We have no such magic powers for her, because she has advanced and incurable cirrhosis of the liver. Her prognosis is non-existent. She will die as a result of her disease: a disease for which she is not to blame. She did nothing to cause this. She is certainly not an alcoholic. If she were a patient in the United States, she would be on a transplant list for a new liver. She is otherwise healthy. It goes without saying that such a thing is impossible here.

We have done, over these past nine days, what we can to make Colusha more comfortable. We have treated her with our most potent antibiotics to eliminate the infection that is almost certainly brewing in her abdomen. More importantly, Melino has three times drained her abdomen of fluid. Each time that he has done so, he has removed at least five liters of turbid fluid. But these procedures are only a temporizing measure, for the fluid accumulates as quickly as it is removed.

Yet through it all, Colusha gives me a radiant smile whenever and wherever I see her, which I do on many occasions. I see her on morning rounds, and I often see her outside sitting on the steps. She likes the feeling of the sun shining on her face, for it warms her disease-ravaged body. She is weak by now, so I often have to help her back to her bed, when she gets too tired to sit. She always clasps my hands in a warm embrace when she sees me. She generally talks to me, at least a few words. She speaks to me in Kurundi, so I understand virtually nothing of what she says. Yet I respond with the few words I do know. My words probably mean nothing to her. We do not communicate in words, but I think we communicate on a different and perhaps deeper level. I believe that she knows that we are doing what we can for her, and that we do care for her. I do not think she understands that she has no hope of recovery, but I think she implicitly understands the severity of her condition.

I have often talked of the "espirit" that one sees and feels here. Perhaps I have talked of it too often. That does not stop me from talking about it again, for this is a different form of the Burundian and African "espirit." It is that form of the "espirit" that Colusha personifies. She is a human being who, except for a swollen abdomen, is skeletal in appearance. This is a woman who has virtually nothing left to her absurdly shortened life; a woman who physically is suffering the effects of a debilitating disease. Yet she still looks to the sun for warmth and comfort. She still looks directly into the camera and gives us a beautiful smile that lights up her emaciated face. It is a smile that speaks of nobility of spirit, of grace and dignity under the most trying of conditions. This is a woman who is dying, and yet she is still capable of transmitting the warmth and generosity of her soon-to-be extinguished being. This is the "espirit" that moved me when I took and ultimately saw these pictures. That is why I dedicate this blog post to her. I can think of no one who deserves it more.

Colusha will probably go home tomorrow, for her time here has come to an end. We can realistically do no more. She only awaits some form of transport to take her home. She is too weak to walk, and her home is too far. I will, as with so many of the patients here, never forget her. That lovely, shining smile, in the face of her abysmal fate, will stay with me. Her smile is, in a sense, the metaphorical smile of Burundi, a country that, like Colusha, has been beset with its own abysmal fate. The metaphorical smile of Burundi bespeaks of the grace and dignity that is this country.

Little Drummer-Man

I have served many roles during my time in Burundi. Perhaps the best known of those roles would be "le roi" (the king). This is a title I wear proudly, as well I should. What greater aspiration could one have than to be "le roi" of the Short Tie Club? It is I, and only I who carries the scepter of power in the STC. Yet that scepter of power is only part of my royal duties. I must also perform all the ceremonial duties befitting my position. It is in that dual role that I serve as "le roi." It is that same dual role that I embrace.

I cherish my role as "le roi." However, that role does not define me. I am also the muganga (doctor) here at the clinic: the muganga for the children who come to this clinic. I have also been called "mupfumu," but my medical expertise at this point does not justify that appellation. I am not yet skilled enough in the art of scarification or the cutting of the uvula and epiglottis to merit being a mupfumu.

I should have been satisfied with my roles as "le roi," muganga, and future mupfumu. I had so much. was not because there was still a role that eluded me. It was a role that I sought with all the energy that my little body possessed. I am proud to say that I have finally accomplished my goal. I have achieved what I sought to achieve. I have become the official leader of the Kigutu drummers. I am now content, for I have reached the pinnacle of my life's work.

I believe that all men aspire to be the leader of an African Drum Corps. Yet so few are chosen to do so. I was the lucky one. It was two days ago that I became that leader. It was then that the Kigutu drum corps had the ceremony marking the passing of the torch from the previous leader to myself. If you don't believe me, just look at the pictures.

These first two represent my introduction as what I would call the drum major.

This next picture has great historical importance, for it is this picture that will serve as the new symbol of the Short Tie Club. In my right hand, you see that I wield the spear. It is that spear that represents our need to attack those enemies who beset us. I refer of course to the Long Tie Club. The shield, by contrast, represents our ability to protect ourselves against those same enemies. Thus, I have in my two hands the two motifs that will insure that the STC will endure: attack and protect.

The next two pictures show me leading my fellow drummers into our musical battle. The troops follow and play their drumming songs.

I was more than the carrier of the spear and the shield. As you can see, I too can be the Little Drummer-Man.

This next picture is Peter (aka Pierre), whom I have previously mentioned, showing, once again, his athletic skills.

The next two are boys demonstrating their dancing abilities, as the drummers played behind them.

Now to the truth of the matter. I was honored that the drummers did this for me. I was hoping merely to have a few photos of me in the drumming outfit. They went far beyond that. They allowed me to be part of a whole performance. I was touched more than I can say. Peter kept telling me I was doing a good job, considering it was my first time. He was being more than charitable. I know my limitations. I have no sense of rhythm. I am, if not the world's worst dancer, certainly in the top ten. If there was a television show called, "So, You Think You Cannot Dance," I would be in the winner's circle every time. Fortunately (for me anyway), I have spared you the most embarrassing photos of my performance as drum majorette. Let's just say that my body does not quite fit in with the athletic, thin, muscular bodies that belonged to my colleagues on that field. Let's also just say that if the video that Melino took of the performance ever comes to light, I will be forced to go into hiding for at least five years. I will only emerge from that hiding if I am able to change my identity. Yet, the bottom line is that I loved doing this; it was a one of the highlights of a journey to Burundi that has been filled with highlights. I thank my fellow drummers for letting me be one of them, if only for a short time.

L'espirit: Part II

I have often talked about "l'espirit" of the Burundians, as well as "l'espirit" of Kigutu, and "l'espirit" of the clinic itself. Perhaps I have talked about it so much that my message has become redundant. Rather than talking about it, I thought it would be more instructive to show it. With that end in mine, it is now picture time. A picture is theoretically worth a thousand words. Assuming that is true, this blog posting is worth about fifteen thousand of those words. I have attached no particular order to the photos, but will explain each in turn. Some of the pictures may have previously appeared on my Facebook page, but a little repetition never hurt anyone.

These first pictures were taken at the clinic today. You can see the muganga (doctor) surrounded by many children. The pictures were taken by Melino, who instructed the children to smile and wave. Most did, but, as you can see, some refused. These children are at the clinic today for a government-run program that occurs every ten months. It is a kind of Burundian vaccination clinic. However, instead of vaccinations, all the children receive a free dose of Vitamin A (their diet is woefully deficient in Vitamin A). Children less than one year receive 100,000 units, and older than one, 200,000 units. They all receive, equally free of charge, one dose of Albendazole, an anti-parasitic medication. It is assumed that all children here suffer from some sort of parasitic infestation. We don't try to figure out which one it is; we just give Albendazole for any sort of abdominal or GI complaint. The feeling is that one cannot go wrong in giving it. That's why Albendazole is probably our most commonly prescribed medication, at least in the pediatric age range.

The next pictures are the boys (with one man thrown into the equation) from Kigutu, all posing for the camera. The group grew and grew as I continued to take pictures. They all assume some sort of attitude.

The next two pictures are the Kigutu drummers in their colorful drumming uniforms. They walk and drum simultaneously, with the extremely heavy drums on their heads. This type of drumming is a Burundian tradition. The drummer in the center in the first picture is Peter, who is one of the heads of the troupe. He is also one of the essential members of the clinic staff. I am not sure exactly what he does. I do know, however, that his jobs are many, and all are integral to the effective functioning of the clinic. He is a marathon runner, and trains by running 10-15 kilometers in the hills, both morning and evening every day. He is remarkably strong and flexible, and I sincerely believe that he does not have one ounce of body fat.

The next two pictures are three adorable girls, standing outside the hut where the hospitalized patients cook their food. The cooking takes place both inside and just outside the hut. Sticks of wood are used to make the fires. If there were a Kigutu Fire Department, they might shut down the hut for not adhering to any safety standards. There are generally three or four small fires going inside the hut, and two or three outside the hut. I am convinced that some of the women who cook must have hands made out of asbestos. There is no other explanation for how they handle the burning hot wood with their bare hands. If a patient is too ill to cook for himself or herself, the food is prepared for them by those who are not so ill. That may be a friend or relative. If you want to know what they are eating, I can only tell you give you very partial information. I saw them cooking bread made out of cassava: not very nutritious, but very filling. I also saw them cook a mixture of tomatoes and carrots and onions. Everything is made in a pot over an open flame.

The next five photographs are what I call my fist-bumping series. The fist bump in Kigutu is the equivalent of the high five in the United States. It is an expression of joy and happiness. It is also an expression of a bond between the fist-bumpers. The children seem to learn it at a very young age. The first three pictures are fist-bumps with children on the malnutrition ward. These are children who have come back to life, thanks to the beneficial effects of getting enough nutrition. They are at the end of their hospital stays on the ward.

This fist-bumper is simply a cute little child outside the hospital. All you see is my hand doing the fist-bumping. You can trust that it is me, for there are no other muzungu (white person) mugangas in Kigutu.

This last one is one of my favorite patients. She is twelve years old, and her name is Divine (pronounced Di-vin-a). She has been in the hospital for at least six weeks for the treatment of a massive abscess in her back. The abscess was deep and extended all to the way up to her diaphragm. She needed it surgically drained under anesthesia, but that proved impossible, if only for financial reasons. However, we were finally able to eradicate the abscess with prolonged use of antibiotics, and, more importantly, by repeatedly opening and draining it. She will go home this week. She is a favorite on the ward. She has become my best friend. We always fist bump when I see her, and she gives me the same shy smile you see here. Her mother, who is quite large by Burundian standards, has also become my best friend. She is the one trying to teach me Kurundi.

The next three pictures are the dancing girls of Kigutu. They are wearing the uniforms that were purchased last year. The pictures give you some idea of the pure joy with which they dance. However, that joy can only be appreciated by watching them dance. It is a sight so touching that it is guaranteed to bring tears to your eyes. It may, in fact, do more than that. You may well find yourself in full crying mode, with tears streaming down your face. Perhaps it is these dancing girls, in their beautiful uniforms, who best epitomize "l'espirit" that is Kigutu. One cannot help but fall in love with this place when one sees them dance.

The last two pictures may not be representative of "l'espirit" that is the theme of this blog post. However, they are representative of the medical "espirit" that exists at the clinic. This baby was born at the clinic Saturday evening. It is the first baby for the family. The first picture was taken when she was an hour old, and the second picture the next morning. The story is as follows: the mother is the sister-in-law of one of the doctors at the clinic. His name is Remy, and he, like all of my medical colleagues, is an excellent doctor. The mother's water broke when she was at 35 weeks gestation. She was immediately admitted to the hospital for observation. She was placed on I.V. antibiotics to prevent infection. The mother is very small; she cannot not be more than 4'10", maybe 4'11" on her best day. I mention this in the context of the events that transpired.

The mother was admitted on Friday, and went into labor late Saturday afternoon. Initially things proceeded well, but the mother soon became exhausted. Her tiny body ran out of energy. It was then that her contractions stopped. We do have Pitocin at the clinic, so a Pitocin drip was started, along with I.V. fluids. Labor once again started, but it was ineffective. The baby was stuck in the birth canal. This would have been an obvious indication for a C-section at home. Such a thing is not possible here. Nor can we do a vacuum extraction. Nor do we have forceps.

There is a hospital in Rumonge where a C-section can be performed. I have seen that hospital. I have been inside that hospital. It is a snake pit, an awful place. (More about the Rumonge hospital in a future blog post) It was now almost midnight. To transport her, we would have had to place her in the back of the van, and travel an hour down a bumpy, rocky treacherous mountain road in the dark to get to Rumonge. Such a trip is difficult enough under ideal conditions, and these were far from ideal. There was legitimate concern that the baby would not survive the trip. There was equally legitimate concern that the nature of the ride itself might cause her to deliver the baby. That could have been a disaster for both mother and child.

There were no options at that point. She had to deliver the baby at the clinic. What ensued next was that Dr. Remy and two nurses pushed on the mother's abdomen, and Drs. Melino and Cyriaque tried somehow to extract the baby from below. It was only after almost two hours of perspiration-filled effort on everyone's part that success was achieved. The baby was delivered, and the baby was fine. That's where my limited role came into play. I examined the baby, and she is, indeed, perfect, weighing 2.5 kilos (about 5 1/2 pounds). I suppose that all's well that ends well. Yet I tell this story because it is symptomatic of the medical issues that the clinic faces in the vast wasteland that is medical care in Burundi. I also tell it to show you pictures of a beautiful Burundian newborn baby.

The Mupfumu and Medical Care in Burundi

The Mupfumu and Medical Care in Burundi

I wrote in last year’s blog about the mupfumu (the traditional healers). Once will not be enough, for I am forced to write about them again. I was reminded again today how dangerous they are. I was equally reminded what a firm hold these charlatans have on the people of Burundi. The mupfumu are the anti-Robin Hoods: they steal from the abjectly poor so that they themselves can become rich (rich by Burundian standards anyway).

The readers of this blog, or, frankly, any blog, must find it difficult, if not impossible to believe the stories that I tell about the mupfumu. I myself would not believe the stories, if I did not know them to be true. Here is an e-mail that I received from Melino just before I left:

Yesterday, a 20 year old woman came at the clinic with a very sick baby: a 14 month old. The baby was malnourished because the mother stopped breastfeeding when the baby was 8 months of age. The reason she stopped was, of course, the fear of the "maladie du sein". The Mupfumu told her to find a rat and kill it and give the rat's blood to the baby. He recommended that she mix a cup of blood and tea spoon of coca cola. She did that and gave the blood to the baby. Unfortunately, it didn't work. She decided to bring the baby to the clinic. When I saw the baby, the mom told me that she knows why the baby is sick. I asked her why. She told me that the baby didn't get better after taking a cup of rat blood and would like to have more.

I wish that the above was an atypical mupfumu story. It is not, for the mupfumu are all the same. There are certain notorious mupfumu near the Tanzania border, who claim that they can cure AIDS, tuberculosis, diabetes, and, basically, whatever else one might have. They do so by the use of herbs. Many patients go to these mupfumu. A number of our HIV patients stopped taking their medications, and, instead, went to them. These misguided patients believed that the mupfumu and their herbs would cure them. It is a given that these patients eventually ended up back in the clinic, needing to re-start their treatment.

There are a thousand other examples of mupfumu misdeeds. I will restrict myself, in this blog post, to giving you two. Those two were women who came into the clinic Friday morning.

The first is a 34 year old woman by the name of Colasha Ngogusenga. She lives far from the clinic, in an area near the Tanzania border. Approximately two months ago, her abdomen started to grow in size, and not because she was pregnant. At the same time, she developed nausea and other unpleasant symptoms. The abdominal size continued to increase almost exponentially over the next month. Her abdomen was now so swollen that she had difficulty breathing.

That was when her husband insisted on taking her to the mupfumu. The mupfumu performed his usual technique of scarification. This consists of making multiple, relatively superficial, horizontal cuts in many areas of the abdomen. The woman’s condition continued to deteriorate, and the husband once again insisted that she return to the mupfumu for further treatment. This time, the mupfumu’s diagnosis was that she had a snake in her stomach; not just any snake, but a python. The only way to rid her body of the snake was to make a kind of soup out of the herbs he prescribed. She was to drink this soup three times a day.

The woman had no faith in the mupfumu. She did not want to drink the herb soup. However, her husband was one of the mupfumu’s devoted followers, and he insisted that she drink the soup. This is a male dominated society, so you can guess who won. However, she achieved a partial victory by throwing it out when her husband was not there.

It was only when the neighbors intervened that the woman, with the husband’s consent, was able to seek medical treatment. She had now been sick for two months, and her abdomen was grossly swollen. She lives far from here, and there were many closer hospitals. However, she decided to come here to the clinic in Kigutu. Why? For the same reason that so many other patients come from so far away: because they have heard that one gets better if one comes here. We are their last hope. Such was the case with Honorine, my five year old with the brain tumor.

I have seen a number of patients come here in what are the final stages of a disease process. Usually, that disease process is some type of malignancy. There would be no hope, no matter how advanced the medical care. They believe that we will cure them, as ill as they are. We cannot, nor could anyone do that. Yet, they are reluctant to leave the hospital until that cure is accomplished. We do good work here, but we cannot perform miracles.

This 34 year old woman, Colasha, traveled two days to get here. She was seen by Melino. I now show you pictures of her. The obvious image that you see is a grotesquely swollen abdomen. Far less obvious are the mupfumu’s lines of scarification. They are most prominent on both sides of the lower abdomen.

Melino’s ultrasound gave us an all-too-accurate picture of what this woman has: her abdominal swelling is a result of advanced ascites (fluid in the abdomen). The ascites itself is secondary to equally advanced cirrhosis of the liver. This is an incurable condition, and we have no treatment for her. The only thing we were able to do for her was to drain off three liters of fluid from her abdomen. This has given her temporary relief, so that she can breathe easier now. However, the fluid will quickly re-accumulate, and she will be faced with the same problem in the very near future. This is a woman who is only 34 years old, and her life expectancy is less than a year.

Liver disease is extremely common here, with a disproportionate number of young people being affected. We don’t know why there is so much liver disease. For instance, this woman’s cirrhosis is not a consequence of Hepatitis B or Hepatitis C infection. Moreover, she does not drink alcohol to excess. Therefore, we do not know the etiology of her cirrhosis. Perhaps there is an environmental toxin of which we are unaware. It is certainly possible that the herbs used by the mupfumu have a deleterious effect on the liver. Whatever the reasons, I have been disheartened to have already seen several cases of advanced liver cancer in relatively young people: all less than forty years old, and one in a nineteen year old boy.

The second case is as much an indictment of the Burundian medical system (or lack of medical system) as it is of the mupfumu. The patient in question is a 25 year old woman by the name of Frolide Ndayikeza. She is unmarried, and had no children. Her story is as follows: approximately three years ago, she developed abdominal swelling in the lower part of the abdomen. That swelling has gradually increased over those three years. During that time, Frolide consulted her mupfumu on multiple occasions. He performed scarifications, and given her herbs on those multiple occasions. Finally, in desperation, Frolide came to the clinic. Here are photos of her. The pictures look remarkably similar to the previous woman. Frolide also has a markedly swollen abdomen. Her lines of scarification are faintly visible on both sides of her lower abdomen.

Melino, once again, performed an ultrasound on the patient. The ultrasound revealed a massive growth in her abdomen. It extended from the base of her pelvis to the bottom of her sternum. It went all the way across her abdomen. The growth measured at least 30 centimeters in both horizontal and vertical directions. It was also 15 centimeters in depth. This was clearly a slow growing process, for it had taken three years to get to that size. In addition, it was, on the ultrasound, homogeneous in its consistency. Therefore, this is presumably a benign tumor. Based on the information we have, the most likely diagnosis is a uterine fibroid tumor. But how could a fibroid get that big? If one does not have access to medical care, and, instead, one continually goes to the mupfumu for treatment, a fibroid could get that big. I was told by one of my Burundian medical colleagues at the clinic that he has seen fibroids removed at surgery weighing more than twenty pounds. I would imagine that this particular fibroid weighs that much. Frolide only weighs 42 kilograms (92 pounds). Take the fibroid out, and she will be down to about 32 kilos (70 pounds).

So what will happen to Frolide? In an ideal situation, the tumor would be removed and biopsied. If, as expected, it is a fibroid, theoretically, she would be cured. It would not be a simple operation, considering the size of the tumor. However, it could safely be performed without undue risk to Frolide.

The problem is that such a surgery would require money. The estimated cost of the surgery is approximately $1,000. It is a given that Frolide does not have $1,000. It is almost a given that she does not have five dollars. She cannot afford the surgery. She has a benign tumor: one that should be curable. Yet she will not be cured. The tumor, simply because of its size, will eventually cause complications that will prove fatal. Already, one of those complications has occurred. Her abdominal aorta has been compressed to such a degree by the tumor that she now has high blood pressure.

Let us say, for argument’s sake, that Frolide could somehow raise $500 for the surgery. That $500 would allow her to have the surgery. Then she would be obligated to pay the remaining $500 before she left the hospital. If she was unable to pay that residual sum, she would be kept prisoner in the hospital until she did so.

Lovely medical system they have here, isn’t it? But, as I have said so many times in my blog posts, such is life in Burundi. It is not fair. It is not just. It is not humane. We at the clinic do what we can to make life better for the people here. But we are only a small piece of the much larger puzzle that is Burundi. One can only hope that the day will come when all the pieces of that puzzle are in their appropriate places. It is only then that life will get better for the Burundians.

The Return of the Short Tie Club

The Short Tie Club: Part II

It has been an emotionally exhausting week here in Kigutu. The story of Honorine, which began on Monday and ended yesterday, is a heartbreaking one. It is a story that I will never forget. But, because this is Africa, one must accept that which one cannot change. One must move on to the present and the future. As part of that “moving on” process, I believe that we should now turn to the lighter side of life in Burundi. It is with that purpose in mind that I once again return to the very serious subject of the Short Tie Club (STC).

It appears as if my recent blog post has stimulated overwhelming interest in the STC. The demand for membership has grown exponentially since I published our manifesto. We are inundated with requests to join our club. We are in the process of considering those requests on an individual basis. We must exercise caution in terms of whom we accept into the club. I say that, not because we are elitists in any sense. We are not; we are, rather, the common man, as well as the common woman. We are of the people, by the people, and for the people. We are your next door neighbor; your best friend; your most loyal confidante. We are there for you in times of sadness and sorrow; we are equally there for you in times of joy and happiness; we are there with you; we are there for you.

The STC does not discriminate on any level, but, yet, we ourselves must be discriminating in whom we do take. To quote Thomas Paine, when he spoke about Revolutionary War soldiers, we, in the STC, do not want any “sunshine patriots, and summer soldiers.” We want people who are committed to our cause now and forever. We do not want those who wear the short tie when it is convenient to wear the short tie, but the long tie when it is inconvenient. We want those who wear the short tie with pride. We want those who are not afraid, even amidst a group of long tie wearers, to wear their short ties.

There is another element in our decision to choose wisely and well in terms of whom we accept into the STC. This is a far more insidious element; a far more dangerous element that has applied for membership in the STC. It is an element that could potentially jeopardize the existence of the STC. We have reason to believe that there are members of the Long Tie Club (LTC) who are trying to infiltrate our club. They want nothing more than to destroy us, and will stop at nothing to do so. These are professional LTC hit men, and they are remarkably good at their jobs. They pretend to be us; they look like us; they wear the short tie like us; they speak like us; but they are not us.

But perhaps, you say, I am merely being the paranoid king of the STC. Perhaps these LTC bogeymen do not exist; perhaps I have invented them for my own purposes; to consolidate my own power under the guise of the common enemy. In a sense, I wish that was the case; that I was unduly cautious and unduly skeptical of the motivations of others. Unfortunately, that is not true. I know that they exist because we have our own experts in the tech/computer department who have intercepted several incriminating e-mails. Those e-mails have allowed us to weed out the villains, but there is still more work to be done. We must be absolutely certain that we have eliminated all of these nefarious characters from the STC. I myself believe that the vast majority of the LTC is more than willing to accept us. It is this small, fringe element that poses such a threat. But we must be careful in the face of such misguided fanaticism.

So now you know why the STC, despite its egalitarian nature, must be so careful in our choice of new members. That said, I am still proud to announce that we do have many new members. They should be applauded for their dedication to the cause. I am confident that they will forever more be loyal wearers of the STC. Here are some of those members:

This is Divine's mother. Divine is one of my favorite patients, and her mother is one of my favorite mothers. Divine, pictured in the next photo, is a small girl of twelve who has been in the hospital for over a month for the treatment of a very large abscess in her back. She is much improved and will probably go home within a week. Her mother is trying to teach me to speak Kurundi.

This is Mr. Mint.

This is Harry, the Bichon Frise

Ozzie, Harry's twin brother.

Ozzie and Harry together in their short ties

Jessica Rees Shulman, the daughter of "le roi."

The STC had its Burundian “coming out” party last weekend in Bujumbura. The short ties literally came out of the closet. The occasion was the dowry party of our expert lab technician at the clinic and his soon-to-be wife. His name is Cyrille and hers Nadine. Before I get to the role of the STC in this event, I should tell you a little bit about the party itself.

The tradition here is for the husband to present his future wife with a dowry prior to the marriage. There is a formal ceremony at which a protracted negotiation occurs between a representative of the husband’s family and a representative of the wife’s family. The negotiation is more symbolic than real, for I believe that the extent of the dowry is determined before the event occurs.

The dowry ceremony is a Burundian “black tie” event. The men are all dressed in suits and ties, and the women to the nines in their flowing Burundian robes. Below you will see a picture of two such women. They were representative of the majority of the women at the party: tall and beautiful.

There is a saying in Burundi: “le temps nous appartient.” (The time belongs to us). What that means is that in Burundi, as well as most of Africa, they are not slaves to time. They own the time, as opposed to being owned by the time. That partially explains why promptness is not an important concept here. One might arrange to meet at 5 P.M., and yet that meeting might not take place until 6 or even 7 P.M. Time does not have the same constraints as it does in the United States. One learns to accept it, as one does with so many things in Africa.

There was even discussion at lunch today whether there is a coefficient to convert Burundian time into American time. Does one Burundian hour equal two, or even three American hours? Do twenty minutes Burundian time equal one hour American time? If, for example, Melino says he will be there to get you at 9 A.M, does that really mean that he will be there at 11 A.M.? The answer to the question is no. The Burundian may be there exactly at the designated time. He may also be there two hours late. That’s because “time belongs to them.”

I interject this commentary in the context of the dowry party. The invitation said the party started at 4:30. We were there at 4:30. We then waited outside by the side of the road for an hour. This was followed by a return to the car, after which we drove approximately 150 yards. We then got out of the car, and walked another hundred yards. That placed us in front of the outdoor hall where the ceremony would take place. We did not go into the hall. Not yet anyway. We waited another forty minutes outside the hall before entering.

Such is life in Africa. One does not question the time. One accepts it, just as one accepts that a dowry ceremony will take three hours to complete. This one was completed in a little under three hours, with Cyrille’s winning bid being two cows.

Now to return to the point of the story: the STC and the dowry. I will, because it is my nature, give you the unvarnished truth. There were approximately 100 men at the ceremony. All of them were wearing ties. I counted twelve short ties among that 100, or a little more than 10%. Am I disappointed in that low turnout? Do I think it presages the demise for the STC? Would I have wanted more STC’rs at that high society Burundian party? The answer is no to all of those questions. I would much rather have a committed and loyal few than an uncommitted many. Any cause begins with a single step. We have taken that step and many more. I believe that the twelve we saw at the dowry party will be twenty or thirty at next year’s dowry party, and who knows how many at the dowry party the year after that? Time marches on, and the STC marches with it. I now leave you with a picture of Melino and “le roi,” as we prepared for the dowry party.

Honorine: Part 3

Honorine: The Last Day

It is only fair to give you the end of the story. Honorine went home today. She was going to stay until Monday, but a family crisis caused her mother to leave today. The mother will walk down the mountain, carrying her belongings in one hand, and Honorine strapped to her back. It will not be an easy trek, for the mountain road is steep and treacherous. Moreover, Honorine is no longer a baby, and her mother is not a big woman. The mother will walk to a small town named Mugara: approximately two hours away on foot. She will then cram her and Honorine into one of the impossibly crowded bus-vans that serve as public transport here. She will then almost certainly have to transfer to another impossibly crowded bus to take her to her home near the Tanzania border. It is unlikely that the two of them will arrive home before tomorrow.

I cannot imagine what will go through the mother’s mind as she makes that arduous journey. Whatever it is, it cannot be good. She came here five days ago, because this clinic was her last hope. I was the symbol of that hope, for I was the embodiment of the “white doctor” that she had come to see. I was the embodiment of the western medicine that would save her daughter. Yet I was unable to make that last hope a reality.

The only good news that I can report is that we did see some improvement in Honorine during her five days at the clinic. I believe that the steroids did make a difference by reducing the swelling in her brain. The Honorine I saw those first two days was withdrawn and constantly crying. The Honorine at the end was often interactive and smiling. I know that this will be a temporary respite, but temporary is far better than nothing.

Her mother asked us before she left what she should do if Honorine’s condition worsened. Should she bring her back to the clinic, or go to a hospital closer to her? It may be true that our clinic is the first place that Honorine had any degree of relief. Yet, who is to say that we would similarly help her in the future? Moreover, the distance to travel is too far, the expense of making that trip too great. Therefore, we have seen the last of Honorine.

I cannot speculate on Honorine’s fate. It is too painful to do so. It is perhaps even more painful to contemplate the “what might have been” scenario. I take no consolation from the fact that I tried to save Honorine, for, in the end, I failed. But I know it was not so much my personal failure. The failure to save her is a failure on a far greater scale. It is an institutional failure; a societal failure; a failure of a world to provide equality of medical care to all its citizens. I am fully aware that such a thing is an impossible dream; that the Burundians will never have the same level of medical care that we Americans take for granted. But there is something inherently wrong in the fact that Honorine would have been saved had she been an American. But she is not. She is a Burundian, and that makes all the difference.

There are no words to describe what I felt today as I said my final farewell to both Honorine and her mother. It was all too sad, too heartbreaking; too much an abject exercise in futility. My only solace was to go back to my work: to the three year old asthmatic who had finally turned the corner after a frightening night of severe respiratory distress; to the four year old on the malnutrition ward who came into the hospital an apathetic, starving child, but who was now a smiling, fist-bumping adorable little girl; to the one month old who came in yesterday with a fever of 40 degrees (104 Fahrenheit), but who was now stable. We do what we can here. We have our successes and our failures. Honorine was among the worst of those failures. But, as one of my Burundian medical colleagues said to me today, this is Burundi. One has to accept the inherent limitations of life here. One does what one can, but one cannot do more than that.

I leave you with my last pictures of Honorine and her mother. The two are pictures of her mother being given honorary membership in the Short Tie Club. You can see a faint, but discernible smile on Honorine’s face, as she sits in her mother’s lap.

Acceptance

Honorine: Part 2:

A good friend of mine is a pediatrician by the name of Tanya Arora. Many of the people who read this blog know her, but, for those who don’t, I will tell you a little about her. Tanya, like me, did her pediatric training at Children’s Hospital of Los Angeles, and she too has spent time working in Africa. In fact, she has spent far more time than me. She spent six months in 2009-2010, working with Doctors Without Borders in the South Sudan.

I have profound admiration for Tanya because of her commitment to the cause of global health. She understands what it is like to work here. She knows as well as anyone the issues and the problems that we face here. She loves Africa as much as I do. That is why I turned to her for advice after I admitted Honorine to the hospital. I enclose below the e-mails we exchanged. Mine is first, followed by her reply.

We share a common experience. We both know what it is like here in Africa. Therefore, I can discuss this with you. I put up a blog post today about a little girl with a brain tumor. The tumor is, if we can believe the CT reading, surgically resectable. I made perhaps a presumptuous appeal to see if anything can be done. I know that we are swimming upstream. We both know that there are far greater problems here than one child with a brain tumor. I know that it is probably ethically wrong to even consider saving one child when so many more could be saved with the same money. But what I could say to that mother? I cannot help you or your child. Take her home, and let her suffer and die. Perhaps it is arrogance and hubris on my part to think that I can do anything. Perhaps I am too used to the American medical model of doing everything for everybody; that one should be able to say, enough. I do not know, Tanya, but perhaps you can and will let me know what you think. All I can say is that it is too ingrained in me not to try and help. Perhaps I should accept things as they are here, as one does so often.

I am so sorry - for this little girl, for her family, for you and for the state of health care there generally. But you are right in that you can’t do much. We don’t know what type of tumor it is, if she would need chemo, what type of surveillance would be required and rehab afterwards if she is left with disability. I had a similar child, but who presented at a later stage and I gave him decadron for palliation as he started to develop signs of increased ICP. There were so many kids that would have survived if they had just been here or just had slightly better care. So much of the reason why I will always want to go back is because I can’t get over that a beautiful healthy wonderful child died from diabetes. I didn’t bring him here because his life and his place was with his family and I wouldn’t be able to bring everyone here so how do you chose one child over another. These choices that we have to make there about who to treat and who to let go of are impossible and ethically will always keep me up at night. It does sometimes feel like playing god and now I know I never want that part of the job! But you have to do what is right for the child and their family in the given context. Doing no harm may mean doing nothing at all. The fact that you are there has changed the lives of so many children. While I know this one is tough, also focus on how many have survived because you are there and allow that to get you through this. My thoughts are with you. Sending lots of love, Tanya

Tanya refers in her e-mail to a child who died from diabetes. This is a previous e-mail from her about that child:

I have inherited a wonderful

patient, a 10 year old diabetic, whose parents haven’t been back to

pick him up for the past four months. They may come after harvest but

if they don’t show up by the time I leave I may have a stowaway! To

keep him busy he accompanies me on rounds picking up tons of English

and often making better decisions and contributions to the plan than

any of my medical assistants, transports patients to the operating

room, he helps with charting, he orients new patients to where the

bathrooms are – he is adorable and one of my favorite parts of the

day.

That was the child who died from diabetes. He died because he ran out of insulin. He died because he could not get back to the hospital for a month. He died because this is Africa, and that’s what happens in Africa. People die here because they do not have access to medical care; they die because they do not have access to medications that are universal in America. People die here that would be easily saved in America. Millions of people and millions of children die in Africa for that reason. The numbers are both staggering and incomprehensible.

The poignancy of Tanya’s regret is that she could not bring that ten year old diabetic home with her. He was, as so many here are, a beautiful and wonderful child. But how could she bring him? How could she choose to save one, and not the hundreds or maybe even thousands of others who similarly deserve to be saved?

Nor am I going to be able to bring Honorine home with me. Nor am I going to be able to save her. That is the awful and brutal truth. I wish with all of my heart that I could do something. But wishing is not going to change the inescapable fact that saving her is impossible.

I have just this evening made rounds in the hospital. I saw Honorine, and I saw a positive change in her. I cannot say for sure what has caused this change. Perhaps it is the steroids (Decadron) that I have been giving her. It may have reduced the swelling in her brain that often accompanies a brain tumor. Whatever the reason, she was clearly more comfortable. She smiled at me; she appeared happier. She even, as per the Burundian tradition, bumped fists with me. Her hand and arm were unsteady as she did so, because the tumor is located in the cerebellum, the part of the brain that controls equilibrium. But, even so, she successfully accomplished what probably was impossible for her three days ago.

I got at that moment a glimpse into the past. I saw the Honorine that existed prior to that tumor. I saw for myself the adorable and beautiful child beneath all that pain. I saw what her mother had before it all went wrong.

I made all the women on that ward, including Honorine’s mother, laugh this afternoon, with my picture-taking and my awkward attempts at speaking Kurundi. I got Honorine to smile: a shy, half-smile that lit up her face; it was a face that had been previously distorted by pain.

Those precious moments were bittersweet, for I know now that this may be the best that we can hope for with Honorine. A cure is out of the question. We have given her temporary relief. Perhaps we have even given her mother false hope that she will get better. I do not apologize for giving her that false hope, because her mother has, at least temporarily, recaptured some of the magic and the beauty that was her child. Part of me wanted to weep as I stood there, as I contemplated Honorine’s future. Yet part of me wanted to rejoice that I was able to bring back a little bit of joy into her life, as well as her mother’s life.

I have questioned myself in these past three days. I have asked myself if I should have publicized the fate of Honorine. Perhaps I acted hastily knowing the impossibility of my quest. Perhaps I should have known that neither myself nor anyone else could save Honorine. But I could no more stop myself from doing what I did that Monday than I can from stopping myself to think and feel. I know now that I can do no more. I have to accept Honorine’s fate, and that acceptance is at the base of much of what I do here. One does what one can with what one has.

My heart will break tomorrow, or perhaps the next day, when I send Honorine home. I am sure that most of you who read this blog will similarly have your hearts broken. In a sense, I feel badly that I have caused you such frustration and such unhappiness over the fate of a five year old child. Yet it is my hope that the story of Honorine will bring greater interest and commitment to the causes that I espouse here. I promise all of you who read this blog that there will come a time and an opportunity when you will be able to help the hundreds and maybe even thousands of Burundian children who so desperately need your help. Yes, one is lost today, but many can be saved in the future. It will be your efforts, your dedication, and your contributions that will save those children. Console yourselves with that thought even in the face of this tragedy.

I have enclosed at the end three pictures of Honorine, as she was today on the ward. You can see her faint smile. The last picture is my hand bumping fists with her little fist, as it is done in Burundi.

An addendum to "The Urgent Plea."

It has only been two hours since I published the post about Honorine. I have received many messages. Therefore, I think it is vital that I clarify the situation. I never intended for my appeal to be directed at individuals. Many people have already asked what they can do. The answer, at this point, is nothing. Some have even wanted to start a fund for Honorine. I would never allow such a fund. As much as I want to help her, I could never accept money on her behalf when so many more could be helped by that money. This can only happen on an institutional basis, meaning that if an organization or hospital, like Children's Hospital, decided that they wanted to intervene. I can understand why they would not, for, if they do this for Honorine, why not do it for anyone under similar circumstances? Why stop with Honorine? Still, I try.

I appreciate the thoughts and charity of everyone, but those thoughts and charity cannot be translated into money for Honorine. Remember, the story of Honorine is merely emblematic of the many stories that I see on a daily basis here. I promise all of you that the day will come when I will ask you to translate your thoughts and charity into the financial help that all of these people, not just Honorine, so desperately need.